Zonisamide and Anxiety: What Users Say

• Pea...
• May 2, 2021

Zonisamide for Seizures "Zonegran has stopped my seizures, but I'd rather have seizures than deal with these side effects. I lost my job due to this medication. I am 21 years old and tried watching Harry Potter... couldn’t understand a thing. Words do not click for me anymore. I had to set reminders for everything because I can’t even remember simple tasks. Social activities are out of the question. I am so anxious and paranoid all the time. I get a feeling that someone is behind me even if I’m lying down or standing up against a wall. I haven’t battled with depression that’s been this intense before. This stuff makes me feel non-existent. All I want to do is sleep. It made me weak physically, emotionally, and mentally. It’s changing my personality and my relationships. It made me so angry and hurtful. It’s scary stuff. I wouldn’t recommend this medication, especially for those who already cannot communicate clearly due to age or disability."

• Mom...
• Taken for 10 years or more
• March 5, 2025

For Seizures "My special needs adult daughter has been taking this medication for probably 20 years and has great results. She does not suffer from anxiety, anorexia, or depression as some have. She has tried various meds plus the vagus nerve stimulator, but now her seizure control is at its best using Zonisamide (100 mg, two caps twice a day) and one additional seizure med."

• Fee...
• August 27, 2020

For Seizures "After 2 days of feeling okay on zonisamide, I quickly started experiencing some extreme side effects. Anxiety, depression, panic, suicidal thoughts, sense of impending doom, and uncontrollable fear. Those are just the side effects that I was worried about. Unfortunately, I had others too. I asked to be taken off the medication and was instead lowered to a 25 mg dose but still had the same side effects daily. After 2 days of unprovoked crying episodes and a trip to the emergency room for chest pain, I asked the emergency room doctor what I should do. The doctor advised me to stop taking it because it is notorious for causing bad side effects. The worst part about the whole experience is that I still had seizures, and I believe the side effects caused a permanent anxiety disorder."

• ste...
• July 3, 2016

Zonisamide for Seizures "This is one of the worst AEDs I've tried over the past 41+ years since surviving Reyes. It caused hostility, agitation, nervousness, restless legs syndrome, suicidal thoughts, and made me so impulsive that I requested an early retirement from a position paying about $104k per year. I probably would not have gone for retirement if the effects of the med had not been there. To top things off, it gave me gingival hyperplasia, so my front teeth are ruined, gum overgrowth is worse than it has been while on any of the other 24 meds I've been given. Intractable epilepsy is tough, but this med might help persons who haven't had trauma or brain surgery. FDA and the maker FAILED to warn me about this. I got off of it."

• Sei...
• Taken for 1 to 6 months
• July 28, 2021

For Seizures "Zonisamide has essentially ruined my life since being put on it. It caused one seizure because the memory issues caused by the drug led me to forget to take my seizure meds and seize, but aside from that, I’m just anxious, nauseous, and exhausted 24/7! In my house, it is known as Zombisamide. I opted to titrate onto Lamictal as soon as humanly possible."

• Cha...
• Taken for less than 1 month
• January 17, 2021

For Migraine Prevention "Took zonisamide 50 mg/day for 30 days, for vestibular migraine. Took away my appetite. Went from 118 to 107 lbs, and counting. I also had side effects of insomnia, agitation, anxiety, full-blown panic attacks. I do not feel like myself! Told my doc, and she said to stop the zonisamide. 5 days off, and praying my body will recover. This stuff is awful."

• Bet...
• Taken for 2 to 5 years
• February 10, 2020

For Seizures "I just finally, after 3 yrs, stopped Zonisamide. I am so happy it’s over! My pain doctors prescribed it to help with nerve pain. While it may have helped that some, the side issues were not worth the small amount of relief. My anxiety was off the charts, my brain clouded and confused. While I may have benefited a bit, the side effects reduced my quality of life. I’m finally having dreams again! I hadn’t had one since I began, I guess my bedtime dose prevented them? I’m just very happy to report I feel like myself once again."

• Jes...
• February 22, 2018

For Seizures "Started Zonisamide about a week ago, and at first, it was okay. I had a bit of mind fog, and now I feel as if I have the flu. My head hurt constantly, even though I was told to take my meds at night. I couldn't sleep for hours, even though I was exhausted. I lose my breath easily and get super anxious for no reason. Even worse, I called my doctor, and they won't take me off of it. Side effects are awful."

• Bru...
• June 30, 2016

Zonisamide for Seizures "I first took it in 1984 as part of the study. It was so, so, it didn't work sufficiently, and the epileptologist took me off of it for fear of kidney stones impacting a teenager. When having major problems with Onfi and having tried 25+ meds over the past 41+ years, I thought I'd see if Zonegran had improved. A physician at Georgetown University in DC failed, like the FDA, to provide information stating that the medication can make a person who has had trauma and/or brain surgery go into orbit. It controlled seizures for a few months, made me do impulsive things like request retirement from a position paying over $104k/year. It made me hostile, nervous, go nuts, and elevated my Dilantin level, caused gingival hyperplasia so my teeth are painful and ruined."

• Ros...
• April 25, 2021

For Migraine Prevention "I took it during 5 months. At the beginning, everything was great, I finally stopped having headaches all the time. Time passed, and I was only getting more side effects. I could sleep 12 hours and still be sleepy, I had trouble with memory and concentration. I basically couldn’t read too many phrases because I was getting confused. It came to a point where I noticed that I had an enormous amount of anxiety, social panic, I was getting a depersonalization feeling behind the cloud like I wasn’t here, like I wasn’t myself. 0 spontaneity and willingness to do anything. I decided to stop it. It can’t be helping one problem but causing so many others. I will see which other solution I can get now for my migraines because they are starting to come back as the medicine is clearing out of my system. (Tried Topiramate before, and it went awful after the first pill). This is to say, all the other side effects that I mentioned went away after I stopped it, so it was definitely its job."